MommaRN

Hi, I’ve posted in these forums once, in the main question area and got a lot of good advice. My 6 yr old son had very antibody positive blood work a few weeks ago after a rapid decline and “failure to thrive.” Other lab work showed malnutrition. He went gluten free for two weeks at the recommendation of our PCP and then we saw the pediatric GI specialist last week who wanted an endoscopy ASAP. He had my son go back on gluten for a few days prior and said 2 weeks of gluten feee wouldn’t be enough time for all the damage to heal so we should still see signs of celiac in the EGD. I was worried we wouldn’t.

Today was the EGD (endoscopy) and the biopsies...and without the biopsies back yet, he told us what he visualized was consistent with celiac. Lots of inflammation was found throughout the duodenum. 

My son lost another 3 lbs and we are so anxious to get these results... I guess they also run a test to see if there are any other foods he should avoid (like lactose)... and what we can do to heal his gut so he can start digesting. They also are testing for pernicious anemia right now and B12 levels. 

Anyone else’s children have abnormally low Alk Phosphatase levels? I know it’s seen with malnutrition and a few other conditions. Did anyone see improvement in those numbers after gluten free. 

Any advice or help with these beginning stages would be so so so appreciated. Thank you!

Thank you for your reply! That all makes complete sense. I guess I’m just scared and nervous right now. I know it will become our new norm and it won’t be that big of a deal, but right now it seems daunting. 

Yes we have many AI diseases in my family and I have Rheumatoid arthritis and Hashimoto’s thyroiditis myself. I was tested for celiac some years ago and do not have it.

That’s what I’ve read everywhere. I understand he will have to go back on gluten for further testing. I just don’t want to do that until we see the ped GI dr and get instructions. We have no endoscopy scheduled yet. Just an intitial new patient appt. Our appt is in two weeks and I’ve been calling for cancellations. I don’t want to put him back on gluten yet, have him lose more weight, not be able to function at all for another two weeks, til we see the dr, then however long til an endoscopy will be scheduled. He can’t sit in the classroom when he has watery diarrhea every hour and accidents cause he can’t make it in time. He wouldn’t be able to attend school and would get worse and worse. I just cannot do that as a mother. 

I will be proactive, and I will do everything to ensure a diagnosis is made properly and put him back on a gluten diet for testing per the GI recommendations. I just need to do this one step at a time and hope I can get him a little healthier before we go back on gluten. We are starting out very behind the 8 ball, I just want to get him better. 

Thank you for your replies and help. We are working on getting the rest of the family tested now too. 

Thank you so much! I don’t know how I could possibly keep him on a little gluten during the testing phase.

When we started this process (before positive blood work), we tried gluten free for about a week and he felt so much better. He ended up eating two things with gluten, a muffin and a cookie, and was so sick he vomited every time something went in his mouth, crying in pain, and the diarrhea was so so so bad. Sooo bad, we almost went to the hospital he was so dehydrated. We got the positive blood work two days later and his ped said to go on100% gluten feee diet and made the referral to a specialist.

He would miss tremendous amounts of school is he had to eat any gluten. I know they need to be on gluten for biopsy but I just can’t fathom doing that to him again. 

Hi everyone. Our whole lives were flipped upside down this month. My 6 yr old son had become progressively sicker and sicker with chronic diarrhea. After back and forth with dr visits and missing a LOT of school, we finally got his celiac panel back very very positive for celiacs. (I don’t have the exact numbers in front of me). He was so weak he couldn’t even walk into get his blood work done, he had to be carried. We are now waiting to see a pediatric GI dr at a large pediatric hospital with a celiac clinic. We have been 100% gluten free for 1 week.

What we’ve noticed:

Significant weight loss, 5 lbs (for a skinny skinny 6 yr old is very significant). He has a distended belly with bony skinny legs and arms now.

Pain in his abdomen that moves quadrants.  so bad at times he can’t stand. This comes and goes. 

Dark rings under eyes. (Always for years)

Now gluten free for 1 week and he is having 1-2 pure liquid, to light colored putred smelling, froathy floating stools a day. Prior to gluten free and when he was so sick he couldn’t stand, he was having 4-6 of these BMs a day.

He vomited after eating (prior to gluten free) on and off for about 1 mo. 

Asthma for 2 years 

headaches

sores in his mouth (like canker sores)

pain in his legs

? Foggy feeling? He’s had trouble learning to read, spell and math. We actually thought he could be dyslexic. But now this is making sense.

sometimes he complains that he tastes a sweet fruity taste in his mouth (anyone ever heard of this?) 

So many things I didn’t realize and am seeing that he has had symptoms for a long time but never put two and two together. It makes me feel horrible he has had to suffer. I’m sure there will be more things that will make sense as we learn.

any advice on our journey? I have two older children and am terrified of cross contamination. I’ve spoken with the school, nurses there, and everyone. I’m considering quitting my job (as a nurse) to be available for him and all the new challenges we will be facing.

please give me some hope of improvement for my angel boy. 

M.